Scary indeed, Camilla, but there are a lot of us here and together we can chase the bogeyman!
I started on 125 mcgs of Palbociclib but ended up in hospital. There is a name for it - pleural infusion I think. My Onco reduced it to 100 mcgs but my neutrophils crashed and my bone marrow was rubbish so I had a two week rest instead of one week. ( Palbo is three weeks on and one off) Now I'm on 75mcgs which I just about manage. I'm very tired on week three, so make the drugs an excuse for lying around and doing no housework! 😇. My neutrophils don't recover well as I'm 71. Going in for bloods tomorrow after one week. It was up to two weeks, but it's obviously a bit crappy so my Onco phoned to get me in. I'm very well looked after, so just go with the flow. I've talked to others who have been taken off it for a 'rest'. As far as I know, in the 20 of us taking it on trial I'm the oldest and on the lowest dose - but it's working with the Letrozole to shrink the mets. X
Thank you Anniej. Really good news for you although iIts all so t has been hard.
Are you still continuing with that same drug even though it's too strong for you?
I have not had the breast op so still have my primary site although 7 rounds of chemo have worked well on the breast tumour.
I will be told on Fri what my ongoing treatment might be.
It's all so scary...
Hi Camilla, sorry I have just picked this up. I was diagnosed with four lung mets, two in each, after a second ct scan in October last year. This was after chemo, and twenty sessions of rads. I still had five to go so I was a bit gob smacked! I was already taking Letrozole before I started my rads. After my diagnosis I was placed on Palbociclib as part of a trial. After three cycles ( which I have struggled with) all my mets have shrunk. I had a two week holiday in hospital in November with what looked like a very severe lung infection, but it was the drug - just too powerful for me. The clouding in that lung is gradually going, but I still have a little dry cough. I feel well in myself, although I do get fatigued at the end of the three week cycle. I have just had my first scan and mammogram which shows no spread and no return in primary site. My Onco is absolutely thrilled for me, as am I! Wishing you the very best. X
Dragoncarine thanks for your reply. The fact that your 2 lung nodules have shrunk down to 2mm is amazing, esp since you're not on chemo. What treatment are you having that's had such success?
I am feeling very despondent so good to have some good news. Will be interesting to hear the results of your latest scan.
Thank you Nicky for your reply. I have an appointment with a BCN on Thursday so I hope to get some reassurance from her. It was picked up on a repeat CT checking lung nodules - which turned out to be benign - but a lesion on my sternum was thickening as a result of the chemo, suggesting it had been there at the outset. Because it was responding there was no change to my treatment at the time.
Fingers crossed for your scan dragoncarine, and good luck for Friday Camilla. Xx
Hi dragoncarine, you must’ve been thrilled with that response, can I ask did you make any lifestyle changes after your diagnosis? I remember you recommending a book about mindfulness, which I then bought, and know from reading on here that you’ve attended Penny Brohn courses, which I have too. Would be very interested to know about any changes you’ve made. Hope this scan has as good a result for you. Thank you, Kate x
Rest assured that may not be the case. Try to find a local group to meet up with - it has been fantastically ressuring for me to meet ladies who are several years down the line with this diagnosis.
I have mets to lungs, bones, lymph & skin and am not currently on any chemo (much to my initial surprise & confusion when diagnosed last year). It will depend on whether your cancer is hormone positive or not which treatment you start on. Many of the ladies on here have had several different treatments as there seems to be lots of different things to try and no one seems to know if they'll work for each individual except by trying.
With hormone treatment (Tamoxifen & Goserelin) my lungs have gone from: one full of fluid + numerous nodules up to 9mm on first scan (May 2107) to very little fluid and 2 nodules, both of which are under 2mm on last scan (Feb 2018). Am due another scan on wednesday so will be interesting to see the difference.
Sandy, I have just been diagnosed with secondary to the lungs. Appt on Fri to discuss treatment going forward. What is your treatment plan? The thought of poss being attached to the chemo unit for the rest of my life is very daunting and miserable.
As you have said, the shock of the secondary diagnosis has just hit you now that your initial surgery and radiotherapy are completed. It does take a while to adjust to this new world so give yourself time. It sounds like you are on the right treatment for your type of BC and that it will be continuing until at least a scan of some sort. It is my understanding that H and P are continued until progression is seen, as it is the ladies on Herceptin alone (before the P was added to the mix) remain on that until progression is shown. It would be unusual to stop it if it appears to be working., after all once you have secondaries you tend to be on one type of treatment (be it for HER2+ and/or hormone + BC) until progression it seen. There is a thread regarding Pertuzamab/Perjeta which I’ll try to find and ‘bump’ up the page. I can’t remember if it’s in the ‘Treatments and Medical Issues’ part o& the secondaries forum or in this ‘Living with SBC’ part. You could ask on there as well to see if any ladies on this combo have been told to stop. Btw I was on this combo a couple of years back but it was found that as I was only very weakly HER2+ I wasn’t getting any benefit from it so I stopped it when progression was seen. The next treatment, at the moment, after this combo is Kadcyla - a chemo regime.
Camilla, hi, although i don’t have lung mets there are other ladies on here, including FF, who do. If secondaries are diagnosed at the same time or, in your case prior to surgery, there seems to be a view that removal of the primary should be delayed or not done at all. In the case of ‘butterfly’ who has just posted I can only assume her secondaries were found after surgery and in fact if there are no body scans done at the time of primary diagnosis there’s no real sign that it has spread already . It’s not unusual for secondaries to show up at the same or similar time as a primary diagnosis it just happens in fewer ladies. If surgery is off the cards for now any treatment you will be having for your secondaries will still be attacking your primary as well, as the treatments are systemic ie not focussed on one area as in the case of radiotherapy. Once a period of stability is shown you oncologist may feel that surgery is an option but to be honest it tends to be up to the individual hospital or MDT rather than a national decision. My secondary diagnosis came after a local recurrence was seen on a routine mammogram, a pre-mastectomy CT scan then picked up my bone mets. The mastectomy was cancelled and the priority was to treat my mets. I didn’t have the mastectomy but equally there’s no recurrence or sign of it - and that was 10 years ago.
I was diagnosed with a secondary on my sternum 3 months after primary, back in October. At the time I was halfway through 8 rounds of chemo before surgery, had had a blood clot so had PICC line removed and was starting 3m of Tinzaparin. Unsurprisingly the implication of the secondary didn’t even register at the time.
Am now post mx and SNB, with 15 shots of radiotherapy which included the sternum, finished yesterday, and the horror of diagnosis is now just starting to sink in.
I am HEP2+ so am having Herceptin and Pertuzumab 3 weekly but the doctors have indicated that they might stop this in October, after 12m, if my PET scan is then clear. This is causing me huge anxiety as I feel that if the scan is clear it means the treatment is working and keeping the cancer under control. And therefore don’t understand why it should be stopped? Equally if it’s not clear, then something else needs to offered as it clearly didn’t do its job.
Has anyone else continued with Herceptin and Pertuzumab beyond the 12 months? Thanks xx
Camilla, I don't have HER2, but I do have lung mets and lymph nodes in chest. I had my primary in fall of 1995 and secondaries fall of 2005. I have had numerous chemos and now some hormonal. I can't promise you 12 1/2 years and no one can. Everyone's cancer is different and responds differently. I just want to give you HOPE. FF
I have been diagnosed today with secondary breast cancer in the lung. Next Friday I have a meeting with the breast cancer team to discuss future treatment. I have just finished 7 chemo cycles for an HER2 tumour in the breast and was expecting a lumpectomy, but with the lung diagnosis the breast op seems to have been put on the back burner.
Is anyone in a similar position and going through treatment for lung metastases? If so what treatment are you having and what has been the outcome so far?
I would be so grateful for any imput. Thank you.
It is very scary to have a secondary BC diagnosis and obviously totally unexpected only a few months after having had primary BC. There will be other treatments options available to you, it could be that your BC doesn’t respond to the type of hormone treatment you were on. We are here to help and share our experiences of various treatments and general questions that will come up. As I’ve said to Anne30 on the main ‘Bone Mets ‘ thread, try not to Google, it will scare you! Stick to websites like this where they provide support and information sheets rather than quoting statistics and the members are all ladies going through the same things and can therefore support you once you know your treatment plan.
I have just unbelievably been diagnosed wit has secondary breast cancer in my bones 10 months after breast cancer diagnosis.l gave been taking letrozole for 8 months so how can this happen l am scaredelighted and confused